Hello, R!

1 March 2010
R has good days and bad days. At the moment, we’re going through a run of not-so-hot days. He’s more in his own world than usual, staring off into the distance, not responding to his name, “good morning,” “Hello, R!” or “Don’t hit your sister!” He works through his drawer of cars one by one, laying his head on the ground so he can watch the wheels going round as he pushes them along. You have to drag him physically away to play with anything else, but he usually will comply for a while. He’s really very sweet-natured that way.

His latest joy is playing with his penis. Aware now that we’ll try to stop him from doing this, he hides behind the sofa to rub it, although it’s not shame or furtiveness, just a practical method of getting his jollies where we can’t see him. Because he can reach inside his Grobag at night to play with it, he manoeuvres it out of its sheaf of nappy and pyjama bottoms and massages contentedly away at it. For a week now, everything has been soaked through with urine in the morning. T suggests I find pyjamas on the internet that have drawstring closures, to keep him from getting it at his willy, but part of me wonders if we shouldn’t let the poor sod have his fun. We don’t want to give him a complex about it, do we? D, our nanny, has tried telling him like a Victorian governess that he’ll go blind, half-joking because she knows as well as I do that he doesn’t understand what she’s saying. I’m not sure if I approve of this approach, however jocular, but as per usual I’m too timid to suggest she shouldn't say that. I want D to be happy because I know taking care of R is a tough gig.

At least he’s responding to music very well at the moment. We sing “The Wheels On the Bus” over breakfast and he makes eye contact, smiles, then positively grins with pleasure as he windmills his hand around for the “round and round” part, giving it wellie at the top of his voice. I get enormous pleasure when I can occasionally coax him to sing along to “Close to You,” which I used to sing to him every night when he was littler, drinking his bedtime milk. He’s mostly in tune, or at least as off tune as my own singing. I wonder if he had a mother who could sing better, he’d have perfect pitch. At the Baby Music classes he goes to on a Monday, he’s the only kid who really sings along. T has taken him there today for a change, which has carved a space for me to write this. I’m glad because I know it will give T a chance to feel pride seeing how well R does some things, sometimes even better than other kids.

Last night while he and E were asleep, T and I kicked off our home autism film festival with “Temple Grandin,” the new biopic of the famous autistic veterinary scientist, and cried steadily all the way through it. I’d been looking forward to seeing it ever since someone I knew posted a link to the movie’s trailer on Facebook with a mocking comment. Soon, lots of people, including some good friends of ours, had joined in the ridicule. I felt strangely hurt and protective of the movie because round our house, Temple Grandin is a secular saint, the woman who overcame her syndrome’s worst problems did something useful with her life.

The trailer was cheesy, the way trailers are, full of shots of Claire Danes as Grandin talking in that stilted way the real Grandin talks (a bang on impersonation, as it happens). The people on Facebook sniggered about “doing the full retard” à la “Tropic Thunder,” and Jodie Foster’s “blowin’ in the wiii-nnnd” autistic speil in “Nell.” There’s something embarrassing about seeing actors play autistics and mentally handicapped people, the naked neediness of thespians fishing for awards by playing damaged people. In the old days I would have sniggered along with them, but now it’s all too close to the bone. Now I all I can hear in their sarky comments is the sound of class bullies in the future teasing R when he talks funny in class.

The movie was better than the trailer suggested. Touching, but never too sentimental, it used a similar device to the one in “A Beautiful Mind” to show how Temple thinks in pictures, but done with a light touch. It was even nice to see the film is as much about her work with animals it is about her autism. Sure, it felt a little made-for-TV but in a good honest way.

The bit that really got to me was a scene showing Temple’s mother Eustacia (Julia Ormond, nice to see her back in work) sitting on the stairs with the young actress playing Temple aged four or so (played by an unknown child actor, enjoying an easy gig since all she has to do is stare into the middle distance). Eustacia is showing Temple flash cards of a dog and a cat, and sounding out the words slowly, trying to get Temple to say the word back, but she keeps turning her head away to stare at the pretty chandelier. Defeated, Eustacia gives up. “Mommy needs a five-minute break now,” she says. And a cigarette, I think, projecting.

That was me a year ago. There had been the odd words. I think R’s first, around five months when I was feeding him something, was “no,” but then after that it was just sounds, random, vaguely comprehensible babble that we “interpreted up” as words. We were in California visiting my family and T had bought R a big double handful of Matchbox cars from the thrift shop to play with, which he loved. At every meal, we let him play with the cars, and I would point to them over and over again saying, “car,” “car,” “CAR!” Eventually, he finally looked me straight in the eyes one day and said the word back: “car.” That was really his first word, aged 20 months.

I just know that while watching the movie that T and I are thinking the same thought: Temple Grandin didn’t speak until she was four, and R is already talking now, at two and three quarters! He won’t be so bad! There’s hope! I wonder if every parent of an autistic child makes these silent calculations when they hear about another autistic kid, holding up mental yardstick in their minds against their own child’s development. We feel luckier than the ones who have older kids who are still not talking, or hate to be touched (R, thank goodness, loves to be hugged). We envy the ones who seem to have higher-functioning kids, who might someday “pass” for normal. Watching neurotypical kids doing neurotypical shit, even my own daughter E, makes my heart break for R.

R hasn’t been officially diagnosed yet. When people ask, we tell him that it’s still pending, although he has already been to see the local authority’s special-needs unit that does the diagnosing. He had a big assessment day back in November, with a consultant psychiatrist who asked us questions for three hours while two psychologists and a speech therapist watched him play. T and I thought this was a preliminary meeting, not the Big One, so we were relaxed as we responded to the questions, our answers slightly different sometimes. They thought we were taking it all very well, when really we were just confused about the date and hadn’t taken in that this particular meeting could change the course of his life.

At the end, they decided they couldn’t give us a diagnosis and deferred for another six months, which means his next assessment is in four weeks. What seems clear is he’s not quite neurotypical, the term they use to describe what the rest of the world calls normal. Yes, they said, he’s showing some signs of autism (lack of eye contact, impaired verbal development, lack of interest in social interaction), but there are many signs he’s not showing -- yet. He’s not very compulsive, for instance, or obsessed with things being in a certain order or routines being followed. The consultant asks, for example, if he’s ever upset by the way we drive. My driving would upset anyone, but I know immediately what she means having read the misery memoir “A Real Boy: How Autism Shattered Our Lives - and Made a Family from the Pieces” by Christopher and Nicola Stevens in which a severely autistic boy freaks out and tantrums every time his parents turn left in their car, forcing them to spiral round the block to get home on every journey. R is just happy to be in the car, wherever we’re going. Cars are very much R’s thing.